Denied Medical Care or Serious Inquiry because of Autism?

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Coyotesheaven
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04 Jul 2017, 10:22 am

I am 23 years old and live with a highly debilitating set of neurologic issues, that onyl began some 1.5 years ago.
While I believe I either have a neck injury or some type of brainstem and inner ear dysfunction, I have not received any real help.. I have been passed from doctor to doctor over the timespan of a year and a half, with the vast majority of them claiming psychosis or refusing to listen to my symptoms, especially after I use the word 'autism'. It's like the first time people hear that they think "you are f*** up and delusional, no help for you" every single time, and no longer consider my concerns as serious or in need of help as soon as possible. It doesn't matter that I am accumulating handicaps by the week and am practically losing everything I found joy in in my life.

I am losing my hearing at a relatively rapid pace from an unknown cause, which is having long term consequences for my sensory processing and psychiatric and cognitive wellbeing, to the point of likely fatality. Along with this I have been stuck in a neverending migraine for over a year, extreme pressure sensitivity to walking, absolute intolerance for loud noises I had no problems with previously, dystonia in my neck, vertigo, dizziness, memory loss, dysautonomia, trouble walking in general, pressure in my head whenever I make a slight neck movement. And that's just a sample of my everyday symptoms I have almost 24/7; there are dozens more.
Because of my health issues I can no longer run, dance, hike, bend over, strain, or even sit down because of how easy it is to set any of the above symptoms off. I have to stand for every moment of my day, which has horrible consequences for my dysautonomia and dystonia. I cannot drive and have lost most of my social opportunities, so I am generally stuck in my household and alone for weeks at a time. I depend on care-taking as if I were 85 years old and living in a senior residence; I need help with being dressed, preparing food, and I cannot do any household chores.

Yet no matter what doctor I visit or where I go and what I tell them, I always get the same response of apathy and a general unwillingness by the physician to help me. I have had all of the tests done except for a spinal tap (high risk for me), and most have come back negative, yet I can't help but think the reviewers are glossing over my imagining, etc, because I mention autism or appear to be upset and distraught over what is going on with me. I know what they tell me cannot be due to simple ignorance alone.

I'm concerned I will die, in due time, from this ignorance and what honestly seems to be lethal discrimination. I want justice for what is happening to me, and what may well be happening to some of my other friends who are on the spectrum. :x



Cetacea
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04 Jul 2017, 11:10 am

I wish I could help! No one deserves to have it like you feel!
I hope that everything will change soon :heart:



Noca
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04 Jul 2017, 9:04 pm

Been there many times in the same boat, many doctors are sociopaths, like a bad Samaritan who just crosses to the other side of the road when they come across someone in need of help. Often if your condition isnt on their pre-defined list of conditions they care about, they don't give a rats ass unless you make them.

Regardless of the cause of your symptoms you need to demand that your doctors get off their ass and do something to actually help. Be blunt, assertive and don't take "no" or any baloney excuses for an answer. You don't have to be nice and make their 10 minutes of their day easy just so they can make the remaining time between when you see one doctor and the next a living hell for you.

It shouldn't have to be this hard to find some help but it is what it is. Doctors make for the worst listeners of any profession or any member of society for that matter.



DataB4
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04 Jul 2017, 9:12 pm

That's horrible to be so misunderstood and ignored by so many doctors! Have you tried disability advocacy organizations in your area? They sometimes have "advocacy" or "independent living center" in their names.



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05 Jul 2017, 1:35 pm

I don't see autism being an issue. You did say they did all the tests except the spinal tap which was potentially dangerous.

As I see it, the issue is that most people don't want to pay for the funding of the study of rare diseases. So, if you have a rare disorder, what are your doctors suppose to do? They have bills to pay like everyone else. No, that isn't right. They have to pay for their expensive education. They also have support staff that expects to get their paychecks. They can't take a few months off to study something interesting if it brings in no income.

http://careers.bmj.com/careers/advice/v ... d=20016323
This article suggest that there are now more obstacles for doctors who wish to take sabbaticals.

https://rarediseases.info.nih.gov/guide ... ndiagnosed
Some hints on getting a diagnosis.

Fact is, once you do finally get diagnosed with a rare disease, if you are able, you can travel around the country to meet others in the same boat and trade "war stories." You can learn more about a rare disease by attending a support group of people afflicted by a disorder than you can any doctor.



nick007
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05 Jul 2017, 6:15 pm

You could try telling them that your willing to spend a lot of money to find out what's going on other than your autism. That might make em more willing to look for things & more willing to refer you to their friends. It sux but the medical system is run by money.


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Chronos
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05 Jul 2017, 11:06 pm

Coyotesheaven wrote:
I am 23 years old and live with a highly debilitating set of neurologic issues, that onyl began some 1.5 years ago.
While I believe I either have a neck injury or some type of brainstem and inner ear dysfunction, I have not received any real help.. I have been passed from doctor to doctor over the timespan of a year and a half, with the vast majority of them claiming psychosis or refusing to listen to my symptoms, especially after I use the word 'autism'. It's like the first time people hear that they think "you are f*** up and delusional, no help for you" every single time, and no longer consider my concerns as serious or in need of help as soon as possible. It doesn't matter that I am accumulating handicaps by the week and am practically losing everything I found joy in in my life.

I am losing my hearing at a relatively rapid pace from an unknown cause, which is having long term consequences for my sensory processing and psychiatric and cognitive wellbeing, to the point of likely fatality. Along with this I have been stuck in a neverending migraine for over a year, extreme pressure sensitivity to walking, absolute intolerance for loud noises I had no problems with previously, dystonia in my neck, vertigo, dizziness, memory loss, dysautonomia, trouble walking in general, pressure in my head whenever I make a slight neck movement. And that's just a sample of my everyday symptoms I have almost 24/7; there are dozens more.
Because of my health issues I can no longer run, dance, hike, bend over, strain, or even sit down because of how easy it is to set any of the above symptoms off. I have to stand for every moment of my day, which has horrible consequences for my dysautonomia and dystonia. I cannot drive and have lost most of my social opportunities, so I am generally stuck in my household and alone for weeks at a time. I depend on care-taking as if I were 85 years old and living in a senior residence; I need help with being dressed, preparing food, and I cannot do any household chores.

Yet no matter what doctor I visit or where I go and what I tell them, I always get the same response of apathy and a general unwillingness by the physician to help me. I have had all of the tests done except for a spinal tap (high risk for me), and most have come back negative, yet I can't help but think the reviewers are glossing over my imagining, etc, because I mention autism or appear to be upset and distraught over what is going on with me. I know what they tell me cannot be due to simple ignorance alone.

I'm concerned I will die, in due time, from this ignorance and what honestly seems to be lethal discrimination. I want justice for what is happening to me, and what may well be happening to some of my other friends who are on the spectrum. :x


Have you had an MRI?

The people who review your images are not actually the doctors you see in person, but are radiologists who only have the images, and what is listed on the order, which is usually very brief. For example, the order might say "MRI - Head: vertigo, migraines".

The radiologist then writes up a report and your doctor tells you what is said in the report.

Sometimes imaging or radiologists miss things. You can obtain a copy of your images and have them sent to radiologists elsewhere for a second opinion, though typically at your out of pocket expense.

What type of doctors have you seen? Have you seen an ENT and a neurologist?



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18 Jul 2017, 12:46 am

Coyotesheaven wrote:
absolute intolerance for loud noises I had no problems with previously


I've been having this problem for the last five days. It's called Hyperacusis but in my case I believe it to be part of Acoustic Shock Disorder which has symptoms of H and mild tinnitus among other things:
http://www.hyperacusis.net/

One of the most worrying things about this is that most doctors don't know much about the condition and their standard tests for diagnosis have been known to cause more damage. There are specialist clinics but they tend to be private and are few and far between. The good news is that the site has a very pro-active community and contains a lot of information.